One
of the most powerful voices for Expanded Newborn
Screening is yours!

By telling your story, and how you were affected by
newborn screening, or the lack of newborn screening, in your state,
you show state legislators why the need for Expanded and Universal Newborn Screening laws are so important for millions of babies.

These families have taken action in their states for Expanded Newborn Screening.

Hunter's Hope will work with you and your family to guide you through
the process of identifying your legislators and taking the first steps
in connecting with them. We can also help provide easy to use, online
tools so members of your community and residents in your state, can
help you make a difference.

Several California families have been working toward the addition of Krabbe NBS in their state. Although the state has yet to pass a law mandating Krabbe NBS, we continue to make progress toward this ultimate goal...

The Hammonds along with other Illinois families advocated for
Newborn Screening for Krabbe and similar disorders and in 2007
legislation was passed. Additional legislation, called the Liam
Hammonds Act, was also passed to study the incidence of Krabbe in
Illinois and promote much needed research to better understand the
disease.

Rosemary Gunsett began working toward Krabbe Newborn Screening in Michigan in 2012 in honor of her granddaughter, Kaitlin, who passed away from the disease in 2006. After approaching her legislator, two special meetings of the state's NBS Advisory Committee were organized to consider adding Krabbe and similar disorders to the state's NBS panel.

The Mattina family, who have two sons affected by Krabbe, joined Rosemary in her efforts. The Mattina's understand the importance of early detection, as their older son, Anthony passed away from the disease in 2004. Because of his diagnosis, Anthony's younger brother Marcus was diagnosed and received treatment immediately after birth in 2008. Marcus is now a vibrant little boy and in elementary school.

Although MI still has not added Krabbe to the state's newborn screening panel, progress is being made toward Krabbe NBS throughout the state.

"The legislation is named for Brady Cunningham, a southeast
Missouri boy who died in April from Krabbe Disease. Earlier this year,
Jessy and Dustin Cunningham brought their son to the Capitol from their
Campbell home to urge lawmakers to approve the bill." ~ Excerpt from
article

"Hunter's Hope teamed up with a New Mexico Family affected by a
Leukodystrophy and with House Representative Rhonda King to increase New
Mexico’s panel of diseases that newborns are currently screened for by
five. Kelly spoke with the New Mexico Senate and Governor Bill Richardson today and they passed House Bill 201, which will amend the Public Health Act, requiring the Department of Health to add five Lysosomal Storage Diseases to the newbornscreening panel." ~ Excerpt from article

"My hope and prayer is that what you learn on this site
will ignite a passion in your heart, a passion so great that you will
not rest until every child born in the United
States is screened for the most diseases possible; ensuring every
newborn in every state has a fair start at life. Did you know that a
simple heel prick through a newborn screening test could have saved my
grandson,
Hunter’s life?" ~ Excerpt from a letter written by Jacque Waggoner, Hunter's Grandma

Marshall and Michael Wilson are two brothers affected by Krabbe Disease - Marshall was diagnosed after the disease was too far progressed for treatment. Michael, his younger brother, was diagnosed early and received a lifesaving cord blood transplant, stopping the progression of this devastating disease.

In past years, the Wilsons worked with their state senator for Krabbe NBS legislation. Although a law has yet to be passed, we know that they have been successful in advocating for this change in their state.

*Pictured: Vicki Pizzullo (Hannah's mom) sharing how Krabbe NBS in PA could have saved her daughter's life

Tennessee

“I believe that my life was saved so that I can speak out for babies with Krabbe, who are unable to speak for themselves. I believe that my purpose in life is to help others affected by Krabbe and diseases like it.” ~ Scarlett Measles, testifying to her State Legislators in support of Newborn Screening for Krabbe Disease

"The Texas Senate on Thursday unanimously adopted a bill by Sen. Carlos Uresti that will expand the state's genetic disease screening program for newborns. Senate Bill 1720 was dubbed Greyson's Law for Greyson Morris, who died just short ofhis first birthday of Krabbe Disease, a degenerative disorder of the central and peripheral nervous systems. Early detection of the disorder could have prevented Greyson's death." ~ Excerpt from article